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Responding to Mean Words from Alzheimer's Patients

Updated on February 19, 2017
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MsDora, a four-year Alzheimer's caregiver, is committed to learning and sharing information about the role and the disease.

Pain inside forces pain outside.

Credit:  J. Williamson in Wellcome Images
Credit: J. Williamson in Wellcome Images | Source

Mean words from my mother caused my greatest frustration. Well-meaning individuals frustrated me even more when they advised me not to take it personally.

"It’s not her, it's the Alzheimer’s talking,” they said.

If a stone pelts you in the forehead, would it make any difference who threw it?

That was the question in my head but I thought most people would respond by explaining the difference between a physical and a mental assault. They probably would not understand that sometimes the mean words felt like blows across my chest and weakened me both physically and mentally.

Bob DeMarco, Founder and Editor of the Alzheimer's Reading Room, suggests that the way to stop the pain from mean words is to stop the words. He points out that caregivers unintentionally contribute to the causes of the patients’ meanness; and that meanness in the Alzheimer’s world has different connotations than it does outside dementia.

As a result of following his proposal, meanness and hurt have dwindled significantly in my situation. Here are four steps that proved effective.


Caregivers may cause or curb the meanness.

Credit: Eli mimundo
Credit: Eli mimundo | Source

(1) Notice the Events Preceding the Meanness

DeMarco suggests writing down the incidents that precede the outbursts until a pattern becomes obvious. I knew immediately what some of my contributing actions were:

  • Giving a command or sounding like I was in control. (“Time for you to get dressed.”)
  • Pointing out that she did something wrong. (“You washed the toothpaste from the toothbrush but you haven’t brushed your teeth.”)
  • Referring to her confusion. (“The floor may seem wet to you, but it is not.”)

My mother became defensive to statements like these, and I understood that the defensiveness came from the disease and not from her. Before Alzheimer’s, she spoke very little compared to the long-winded excuses and arguments she gave in her defense. Rebuttals made her angry, and it was apparent that her strongest expressions of outrage manifested themselves in verbal abuse.

Recognizing the power to cause or to curb that meanness was the start to the solution.


(2) Initiate the Change

Can you guess from the things that upset my mother that she likes to be in control, doesn’t like to admit that she’s wrong, and is in denial about her confusion?

It is natural for caregivers to want to set the patients straight. We prefer them to submit to their debilitation, and trust themselves to our control. Truth is, they have no ability to reason or to cooperate with us. Any changes in the stress level created by these adverse situations have to be initiated by the caregiver.

It begins with weighing our words carefully, and ignoring their statements which sound like arguments in the making. It takes time and practice but it pays off.

  • Instead of commands, offer help. "Let me help you get dressed." The patient may just sit there looking at the clothes. She needs the help and she cooperates when the offer is made. This is true in most situations where inactivity might resemble rebellion.
  • Without mentioning the wrong action, offer, “Let me put some more toothpaste on the toothbrush.”
  • Without referring to her confusion, suggest, “Hold my hand and let’s walk together.”

Situations which I previously avoided have now become welcome challenges to see how much I have improved in my communication with her. Sometimes I am shocked at how easily we accomplish things together. It’s not perfect, but when I make a mistake, I immediately think of how to correct my fault the next time.


(3) Enter the Alzheimer's World

DeMarco recognizes two different worlds between which caregivers learn to go back and forth.

  • The Real World is the world in which we think people behave rationally.
  • The other is the world where people with dementia live, and he refuses to call them irrational; they are just “deeply forgetful.”

He thinks that it is the people in the Real World who become irrational in their expectations of people from the forgetful world, and that is a fact for us to consider. After all, the forgetful people are using the brains they have left; and when they get things right, it is much more of an accomplishment on their part than it is for people in the Real World.

The red blobs show the location of the hippocampus (the memory gateway) in the temporal lobes of the human brain.

Credit: Washington Irvin
Credit: Washington Irvin | Source

Carole Larkin, Certified Geriatric Care Manager, explains that the hippocampus is the part of the brain that registers information and sends it to other storage areas. It is one of the earliest parts of the brain damaged by Alzheimer’s; it stops registering instructions, answers to questions, and any information passed on in conversation. No registration, no storage. The patients cannot recall what is not stored.

When we understand what they’re up against, we become more patient, more understanding and more helpful. We become their cheerleaders instead of their commanders. We make the effort to elicit from them pleasant words and actions, rather than communicate with them in a way which extracts their meanness.


(4) Kill Meanness with Kindness

Entering the Alzheimer's World with the intention of understanding the patient's dilemma makes us better, kinder persons. We smile more often. We stop seeing our duty as merely ADL (Activities of Daily Living) facilitators; we commit to helping them enjoy, not just endure, the life they have.

How often do you read articles or books about Alzheimer's disease?

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Developing the characteristics of God's Spirit—love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, and self-control (Galatians 5: 22, 23 NLT)—becomes an actual experience in our role as caregivers; and the best part of all this is that the new person we become transfers into all our other relationships.

The patient becomes a new person, too. My mother seems more trusting and definitely less mean.

As a result of following these steps, now I can suggest to others who worry about their patient's meanness not only why it happens, but also how to defuse it. My fearful, frustrating situation has turned into a happy (sometimes), learning, sharing experience.


References

DeMarco, Bob: Alzheimer's Reading Room, When Dementia Patients Say Mean Things, What Can You Do? (9/17/2013)

Larkin, Carole B. MA, CMC, CAEd, DCP, QDCS, EICS; Alzheimer's Reading Room, How the Loss of Memory Works in Alzheimer’s, and How Understanding This Could Help You, (11/22/2014)

© 2015 Dora Isaac Weithers

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    • MsDora profile image
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      Dora Isaac Weithers 9 months ago from The Caribbean

      Peggy, great that you are intentional about enjoying your mother's presence. I miss having mine around, and I am always encouraged by individuals like you who receive help from my sharing. Thanks.

    • PegCole17 profile image

      Peg Cole 9 months ago from Dallas, Texas

      Reading about your experiences always makes me mindful of the true beauty of still having my mother with me. Although she is demonstrating many of the behaviors you describe here, you've given me options to try and manage my reactions to her sometimes unkind words. It must be extremely frustrating to lose a part of our memories that leave us so dependent on others. Thank you for your explanation here and for your suggestions.

    • MsDora profile image
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      Dora Isaac Weithers 17 months ago from The Caribbean

      Yecall, I know what you mean about keeping silent, but I get more help and encouragement when I state the problem. Thanks for your very kind words.

    • yecall profile image

      yecall 17 months ago from California

      I think this is a very important hub because you use examples from your own life. You open up about your own life, Ms. Dora and that is what is so beautiful about you! Many would try to keep this silent but not you and you are helping so many other people! Just think of the desperate people who are searching for the answers and you are giving them the "straight talk" that they really need. Wow!

    • MsDora profile image
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      Dora Isaac Weithers 17 months ago from The Caribbean

      Glad to help you, Audrey, in the process of helping myself. I really appreciate your feedback.

    • vocalcoach profile image

      Audrey Hunt 17 months ago from Nashville Tn.

      Watching my dear sister struggeling with this disease is so difficult. But now I've found both support and answers by studying your hubs. Do you have any idea how grateful I am for the valuable information you are sharing here?

      You, Dora, are an answer to my prayers. Thank you dear Angel.

    • MsDora profile image
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      Dora Isaac Weithers 19 months ago from The Caribbean

      Thanks, Rajan Jolly for reading and helping to spread the word to other caregivers.

    • MsDora profile image
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      Dora Isaac Weithers 19 months ago from The Caribbean

      Geri, thank you for your compassionate comment. I appreciate you.

    • rajan jolly profile image

      Rajan Singh Jolly 19 months ago from From Mumbai, presently in Jalandhar,INDIA.

      Now this is very interesting and of course very useful information for anyone taking care of persons with Alzheimer's/Dementia. Have shared this ahead. Thanks for this educative hub.

    • gerimcclym profile image

      Geri McClymont 19 months ago

      MsDora, I appreciated reading this article especially because you wrote from your personal experience. I can only imagine how painful it had to be for your own mother to speak hurtful words to you while you were trying to care for her. It was very encouraging for me to read how your mother's behavior and attitude changed as you allowed God to transform you through His Spirit.

    • MsDora profile image
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      Dora Isaac Weithers 19 months ago from The Caribbean

      Randa, it's a challenge but it helps to remember the humans as you suggest, and also to realize that the purpose of adversity is to bring the best out of us.

    • RandaHandler profile image

      Randa Awn Handler 19 months ago from USA

      I loved reading this Hub. Good suggestions. My mom had dementia and I appreciate you taking the time to post this. Sometimes caregivers forget that humans are still hidden behind ugly diseases like dementia and Alzheimer!

    • MsDora profile image
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      Dora Isaac Weithers 19 months ago from The Caribbean

      Thank you, Tireless. The people you know might find this timely.

    • tirelesstraveler profile image

      Judy Specht 19 months ago from California

      Dear Ms, Dora,

      This is so very useful. I have limited experience with Alzheimer's , but I know people who do. Going to pass this on and share.

    • MsDora profile image
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      Dora Isaac Weithers 19 months ago from The Caribbean

      Thanks Teaches. You encourage me. Happy New Year to you and yours.

    • teaches12345 profile image

      Dianna Mendez 20 months ago

      We went through this with my father. It was difficult to see him act out of character. Your adding scriptural wisdom is part of helping someone through the journey.

    • MsDora profile image
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      Dora Isaac Weithers 20 months ago from The Caribbean

      Thank Audrey. Happy holidays to you, too. Yes, this is scary and I'm praying for the strength and the skills to be effective.

    • AudreyHowitt profile image

      Audrey Howitt 20 months ago from California

      This is the one disease that scares the tar out of me--what a wonderfully loving person you are--and this is such a hopeful way to deal with a terrible loss really--happy holidays to you!!!

    • MsDora profile image
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      Dora Isaac Weithers 20 months ago from The Caribbean

      Deb, thanks for your comment. Just a few hours ago I was talking with a caregiver about children growing up with grandparents with Alzheimer's, and was surprised to know that even the grandparents are mean to the children, the children still cling to them. You validate that. I appreciate your contribution.

    • aviannovice profile image

      Deb Hirt 20 months ago from Stillwater, OK

      I was only 17 when I saw my grandmother, which unfortunately, was for the last time. She didn't make sense some of the time, but I ignored that, and enjoyed her COMPANY. She would become lucid for that week or so occasionally, and would tell me what it was like when she was growing up. My Aunt Marion was her caregiver, and would "instruct" her when to go to the bathroom, get dressed, etc. Gram would get a little snappy, so I see EXACTLY what you are talking about.

    • MsDora profile image
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      Dora Isaac Weithers 20 months ago from The Caribbean

      Frank, it is tough but we pray for the heart and the skills to do an effective job. Merry Christmas to you and family!

    • MsDora profile image
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      Dora Isaac Weithers 20 months ago from The Caribbean

      Jodah, I can understand your wife's concerns. Now I worry that my mother will be ill-treated in a care facility because she gets so difficult; we just have to pray that we end with the kind people, relatives or professionals. Thanks for sharing and have another great Christmas!

    • Frank Atanacio profile image

      Frank Atanacio 20 months ago from Shelton

      MsDora your gentleness really shows through your hubs... It has to be really tough to handle folks with this or any other mind weakening disorder.. bless you and have a safe Christmas...

    • Jodah profile image

      John Hansen 20 months ago from Queensland Australia

      This is a very good and helpful hub MsDora. My wife worked as a carer and some of her clients had dementia. She made me promise that if she ever is diagnosed with alzheimer's or dementia that I will put her in a care facility, because she has seen how angry the sufferers can get and how they treat their loved ones.

    • MsDora profile image
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      Dora Isaac Weithers 20 months ago from The Caribbean

      Thanks Chitrangada. You're right. Everyone should be treated with kindness and compassion. I appreciate your comment.

    • ChitrangadaSharan profile image

      Chitrangada Sharan 20 months ago from New Delhi, India

      This is a such an important subject especially for caregivers . To look after a patient without getting impatient is not easy for everyone. Not only Alzheimer's patients but If we treated everyone in the way that you suggest, their response would be much better. One can only know it when they have experienced it. You are so thoughtful and your Mother is so fortunate to have you caring for her.

      Thank you for sharing this very thoughtful hub!

    • MsDora profile image
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      Dora Isaac Weithers 20 months ago from The Caribbean

      Denise, we often do not consider "varying levels of intelligence and memory ability" but we should. Thanks for commenting and underscoring that.

    • denise.w.anderson profile image

      Denise W Anderson 20 months ago from Bismarck, North Dakota

      This is a very important concept, not just for those with Alzheimer's, but in any family situation where we find ourselves getting into arguments with loved ones, whether they be adults or children. We all have varying levels of intelligence and memory ability, and whether we admit it or not, our actions make a world of difference in the actions of others!

    • MsDora profile image
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      Dora Isaac Weithers 20 months ago from The Caribbean

      Swalia, I couldn't agree more. Thanks for commenting.

    • swalia profile image

      Shaloo Walia 20 months ago

      'Kill Meanness with Kindness' - a very effective mantra to deal with meanness in every situation of life!

    • MsDora profile image
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      Dora Isaac Weithers 20 months ago from The Caribbean

      Lori, thanks for sharing your experience with this lady. I would be the last one to say that the caregiver does not experience real hurt; and because you made the emotional link to yells from your past, it is bound to affect you. It is a personal hurt, and I can relate to that.

      You may not have been able to stop her outbursts because there were aspects of her illness you did not understand; not because you are a failure. Your kind and caring spirit still allowed you to have a good visit today. That's something to celebrate.

    • lambservant profile image

      Lori Colbo 20 months ago from Pacific Northwest

      Boy, sensitive emotional subject for me. I had a couple I was caring for. They and their family became dear friends and the caregiving team were like family. I ended up resigning, although I still see them all as friends. The woman had dementia, very high functioning. Although I was trained in dementia, eventually I could not cope with outbursts and agitation. I heard the same from everyone as well, "It's nothing personal." I knew that. I tried every tack given me during training. I talked with the supervisor and other caregivers and they were all handling it a whole lot better than myself. I tried their tips. The thing was, it didn't really bother me except when I needed her to take medication or something else very important. As I said, I tried many different ways to approach her. It was not always like that, but she went through seasons of it.

      I learned her triggers - too many people and excitement on holidays or some other occasions; when the weather was overcast, rainy, or stormy; when it became dark; when her husband had the TV on and it was too loud or not loud enough. I learned to do something to help. I'd light a fire or turn on twinkle lights on the mantle and windows when the dark was bothering her. But I had no control over many of those triggers. The best I could do was try some distractions or engage her in conversation, turn on music, etc. But when she was going through a season of agitation it seemed nothing I, or the others did that would calm her. It got to the point where I felt I couldn't serve them effectively. He was always worried she was hurting my feelings and that created more stress. I would tell myself it wasn't personal, but when raised voices began it was an emotional trigger I think from years past of being yelled at by a husband and father. No matter how much I reasoned, the emotional side reacted. I still feel like I let everyone down. I visit often and she is doing very well. We have a delightful time together. She recently lost her husband of 71 years and God's mercy has been astounding. She is doing very well. As a matter of fact I spent some time with her today. It was a good visit. But I've never quit feeling like I failed. Thanks for writing this Dora.

    • MsDora profile image
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      Dora Isaac Weithers 20 months ago from The Caribbean

      Thanks, Bill. I needed help to come to terms with this problem, so the advice is for me first. It's been a learning experience and I can truly say that I'm better at it now. Merry Christmas to you and yours, also.

    • billybuc profile image

      Bill Holland 20 months ago from Olympia, WA

      Excellent advice, Dora. This is most definitely a problem from time to time. I've experienced it and, as it turns out, I handled it well, but it's nice to hear you say the same advice. Thank you and Merry Christmas to you and yours.

    • MsDora profile image
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      Dora Isaac Weithers 20 months ago from The Caribbean

      Thanks Alicia. My prayer is that it will help others the way it really helped me. These suggestions really work!

    • MsDora profile image
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      Dora Isaac Weithers 20 months ago from The Caribbean

      Manatita, thanks for your understanding and your love. I appreciate you!

    • AliciaC profile image

      Linda Crampton 20 months ago from British Columbia, Canada

      This is an excellent hub, MsDora. The fact that you've shared practical suggestions for helping Alzheimer's patients is very important. I love the idea that when the caregiver changes their attitude and behaviour as you've described, positive results may occur. I'm sure this hub will be helpful for other caregivers.

    • manatita44 profile image

      manatita44 20 months ago from london

      I can only hope it was not me, my Sweet. I honestly do not see how you could not take your mothers pain seriously. Indeed it's a real problem for many sons and daughters.

      Still, we all need to find a way to deal with it in the process of growth, and it seems to me that you are doing nicely. I wish you an ever-increasing fortitude. Much Love.

    • MsDora profile image
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      Dora Isaac Weithers 20 months ago from The Caribbean

      Manatita, believe it or not, a few weeks ago the purpose of this article was to validate my pain and ask folks to stop telling me not to take it personally. My research resulted in a change of heart, and an entirely new situation. Yes, I am coping much better, thank you. Thanks for the Christmas wishes, and I hope you also enjoy much happiness during these final days of the year.

    • MsDora profile image
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      Dora Isaac Weithers 20 months ago from The Caribbean

      Merry Christmas Jackie, and a Happy 2016! You're right about making life easier for the caregiver; that is so important. I know that you have good memories of your loved ones who have passed on; they help.

    • MsDora profile image
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      Dora Isaac Weithers 20 months ago from The Caribbean

      Thanks Reynold. I can tell you that it has helped me, and I wish for everyone the decrease in the amount of stress that I now feel. Perhaps, when I get to the United States, I can obtain some of your work.

    • manatita44 profile image

      manatita44 20 months ago from london

      You sound like you are coping better, Dee. Yes, perhaps learning extra life-skills, as you seem to indicate. So all this is healthy and invaluable to you and us also.

      Good to point out these noble approaches from De Marco and others points of view. They serve as beacons to guide us in our care and understanding of all those not only with Alzheimer's - challenging at it may be - but other forms of ailments also.

      A very useful and educational Hub. May your Christmas be fruitful and filled with the mercy or goodness, of our Lord.

    • Jackie Lynnley profile image

      Jackie Lynnley 20 months ago from The Beautiful South

      I have been there Dora not only with my mom but also my mother-in-law and what you say is absolutely true. They are like a child but with more knowledge so we can't quite treat them like a child. Love and kindness is a good answer for most of us for everything isn't it? I envy your time with your mother even under such circumstances. What I wouldn't give to hold and hug my mom just once more.

      Great article to teach caregivers the best way not just for the patient but for themselves making life calmer and less eventful. Sharing.

      Merry Christmas to you and your mom!

    • Reynold Jay profile image

      Reynold Jay 20 months ago from Saginaw, Michigan

      Hi MsDora--wonderful HUB that may very well help so many understand what they are dealing with and how to handle themselves. I have a scene in Lean against the Wind which deals with this. Well done.

    • MsDora profile image
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      Dora Isaac Weithers 20 months ago from The Caribbean

      Carole, you encourage me by letting me know that the article helped you. Thank you very much.

    • MsDora profile image
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      Dora Isaac Weithers 20 months ago from The Caribbean

      Flourish, Merry Christmas to you and a Happy, Prosperous New Year! My effort is about passing on what God passes to me. This trend of thought has really helped me, and I am excited to share with those who might need it.

    • MsDora profile image
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      Dora Isaac Weithers 20 months ago from The Caribbean

      Eric, you're all about love. You rub off on me, too. Thank you and Best to you!

    • MsDora profile image
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      Dora Isaac Weithers 20 months ago from The Caribbean

      Shauna, thanks for validating that statement. It adds purpose to the caregiver's role, and is also applicable in all our relationships. I appreciate you!

    • MsDora profile image
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      Dora Isaac Weithers 20 months ago from The Caribbean

      Jasmeet, glad you like the article. Thanks for commenting.

    • MsDora profile image
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      Dora Isaac Weithers 20 months ago from The Caribbean

      Sallybea, Merry Christmas to you and family! I appreciate this and all the other kind comments you make on my articles. You're right. Kindness should not be only for the sick in our care; everyone has something going that can be helped by kindness. A Happy, Prosperous New Year to you, as well.

    • Carola Finch profile image

      Carola Finch 20 months ago from Ontario, Canada

      I am a caregiver to a person with dementia and could relate to a lot of what you said. Thanks for sharing. It helped me be less frustrated and more patient.

    • FlourishAnyway profile image

      FlourishAnyway 20 months ago from USA

      What a kind soul you are, a true gift of a human being to convey this compassion to others on behalf of Alzheimer's patients. I hope it helps many people. Merry Christmas.

    • Ericdierker profile image

      Eric Dierker 20 months ago from Spring Valley, CA. U.S.A.

      It did me good to read this article. The love and compassion you exude is contagious, at least to me. Now I will heed this advice in daily living.

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      Shauna L Bowling 20 months ago from Central Florida

      Dora, I think the most important point you brought up is to help the Alzheimer's patient enjoy, not merely endure life. What a powerful statement! It all comes together when you approach treatment with that mindset.

      You've offered very sage advice here and should be heeded by all people in their treatment of others regardless of their health.

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      Jasmeet Kaur 20 months ago from India

      What a great hub you shared..very informative..

    • sallybea profile image

      Sally Gulbrandsen 20 months ago from Norfolk

      MsDora, this is a fascinating subject and one which is very close to my heart. I rather suspect that if we treated everyone in the way which you suggest, their response would be a whole lot better. It is so easy to get it wrong! You only know it when you have experienced it! You are wise lady MsDora and your Mum is a very lucky person to have you caring for her.

      I hope you have a wonderful day and my best wishes go to you and your for a very Happy Christmas and a prosperous New Year.

      Best wishes.

      Sally.

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      Dora Isaac Weithers 20 months ago from The Caribbean

      Word, what a bright cheerful comment for a start! Thank you very much, and I hope that you are enjoying the merry spirit of the Christmas season!

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      Word 20 months ago from Chicago

      Good morning Dora, You turned this situation into a beautiful one. You mentioned God's Spirit (Fruit of the Spirit) which the most beautiful thing is required and therefore, works better than any other attitude in caring for an Alzheimer's patient. Your advice was gospel. Amen